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I have gone to caregiver support groups where both caregivers and social workers have told me not to bother. The reason for her dementia is not important since there is nothing that can be done. Other than her forgetfulness, she is in good health. She only takes vitamins. No other medication.

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You don't need a REASON for her dementia. You might want to rule out other causes of memory loss: brain tumor, normal pressure hydrocephalus, vitamin deficiency and other treatable causes.
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Dementia isn't an inevitable part of aging.
My mom's mental and physical health changed very abruptly in her early 90's and I was left trying to make sense of it all on my own, that's how I found AgingCare. I never did get any help from any of mom's doctors; her GP had previously sent us to a neurologist who was only focused on stroke prevention, despite brain scans neither of them ever discussed any potential for dementia. The ER docs couldn't see beyond her age and more or less told me she was end of life and the nurse who was in charge of her home care told me the same, nevertheless she lived years beyond that point. I'm pretty sure a diagnosis wouldn't have changed anything but it certainly would have helped ME to understand and make plans.
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Rabanette Feb 2020
I just Googled it.

"Dementia mostly affects older people, and the risk of dementia increases with increasing age. ... Nearly 1 in 4 people aged 85-89 have dementia. It is rare for someone under 65 to have dementia, but it does occur at younger ages and we call this 'younger onset dementia'."

With dementia effecting the elderly at almost 25% of the population, doesn't it seem that it IS an inevitable part of aging?
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I would first discount a UTI, which is treatable and can cause confusion and other behavior symptoms (and is very very common in the elderly with no other symptoms). I think knowing what exactly she has *may* help in knowing the trajectory of her illness, and may help in knowing what to expect and understand her changes better. But you need to balance this knowledge out with the rigors and expense of the testing. There's no right or wrong answer here. May you have peace in your decisions.
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Just had my step mother diagnosed including a MRI. The only reason we did it was because my brother & I are going for guardianship. The Neurologist was a waste of time, such silly questions, the MRI did determine that she Front Temporal Dementia.

If it were not for the guardianship we wouldn't have done this. There is no cure, nothing to help her.
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disgustedtoo Feb 2020
There are reasons for pursuing these kinds of tests, but in general are of no help really. Often from the symptoms and/or early progression they (or we) might be able to determine what type it is. The only use there is to be more prepared because different types lead to different symptoms, progressions. Plain old vanilla dementia is very different from Frontal Temporal and Lewy Body. Also, some medications are contraindicated in some forms of dementia.

If anything is tested, it should be non-dementia tests to rule out other medical issues, such as UTIs, which can cause dementia-like symptoms and are most often treatable!

I wouldn't go to a neurologist just to determine the type, unless regular testing can't determine if it is something like Frontal Temporal, Lewy Body OR as in your case you need it for guardianship or perhaps some medication is needed to help calm a person who has hallucinations, sun-downing, etc and it is bad enough that it needs some control. Otherwise, it is what it is, testing won't change anything, but getting informed about dementia, the various types, what you might expect and a sample progression WILL help those caring for or advocating for a LO will be better prepared to do what needs to be done! Keep in mind that each person's journey is unique - they have similar symptoms and progressions, but progress at their own rate and experience things differently.
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I suggest it IS important to see a specialist to have dementia diagnosed, and the earlier the better. In fact any cognitive issues should be investigated early. It provides a base line from which to measure deterioration, it gives both carers and care receivers a window to plan for the difficult and rocky road ahead. The earlier dementia or MCI is diagnosed the earlier counter measures can be introduced to try to stave off progress of the disease. There is very little available to help at this stage but research is going in the right direction and it is best to be open to trying new approaches as they come along than still be in the is she/isnt he suffering from dementia phase.
I suggest learning the reason for dementia IS just as important, equally so if there is, or is not, any family history. It allows other family members to come to terms with the possibility/likelihood of them contracting the disease, not to mention planning their own futures, and taking advantage of every research development as it comes along.
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thepianist Feb 2020
A diagnosis might be important in a younger person, but this woman is 95. Let her be. Yes, knowing your family's health history is important. But what is more important is this woman's comfort. I would not put here through any testing that might be either physically or emotionally distressing for her. There are probably many other family members whose cognitive health can provide clues to the likely issues other family members might have down the line.
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If your mom has only had memory issues in the last year, I wonder if it's the abnormal memory loss of dementia, or instead the normal memory loss of aging. I agree with those who say, don't bother. How would a label (vascular dementia, Lewy Body, Frontal Temporal, Alzheimer's, etc.) really help your mom? And why put her through tests that might at the very least have a degree of physical discomfort for her, and possibly be emotionally distressing? Take her out for a nice ride and an ice cream instead of to the lab. And continue to keep her meds free!
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I agree with other posters about not taking your mom to a neurologist. What are you going to do with that info? She’s 95! It is expected that most ppl at her age would be forgetful. Heck, I am only 50 and I have memory issues. 😎

HOWEVER, you may want to get her to agree now to make you her PoA for financial and medical matters. Without that power, you will not be able to make decisions for her if she is incapacitated.
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Even my mom's doctor said don't bother. There is nothing that Will cure it. All they can do is chase and treat symptoms. Tests of any kind will be hard on mom. Imagine how difficult to be in the MRI tube, have to lay still for 20 minutes or longer.

But identification of the type of dementia might be possible, but not a certainty. That can only be done post mortem with an autopsy.
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For the most part, I agree with everyone that says a specific type of dementia won’t change much. And I’m at the point where I am questioning many other tests and treatments for my dad. One thing I’d like to say is that if it’s Lewy Body there are some commonly used medicines which can make things worse. If you are suspicious of that type of dementia maybe the primary care doc can help you compare symptoms with your LO.
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I agree - to what end. Your mother is 95 and memory loss should be expected. Count your blessings and spend your time enjoying your mother instead of searching for reasons for the natural decline of aging.
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Your post sounds more of a bragging situation..I lost my mom at age 90 and her mind was totally eaten up with Alzheimer's unable to smile, respond the environment, and did not talk. She even forgot how to do a bowel movement, so I had to put her on a bowel schedule. She was unable to stand or walk because she forgot how. I would gladly give my soul to the devil if I were in your situation and still have my mom that long and still completely with it other than some forgetfulness. Let me assure you--there is no cure for old age.
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Their reason seems reasonable... until.
That is until you know that often times dementia is just a temporary symptom when an elderly person has a bladder infection. UTI’s manifest differently in older people than in younger people. No pain when urinating as when younger. My dad has moderate Alzheimer’s and I moved my mom and dad in with us about two years ago to lighten the load. When he takes a turn for the worse on memory, I know the UTI has returned. Tests are done to confirm, anabiotic’s are prescribed, and by the time the round of anabiotic’s are finished, my pop is back to his cheerful self and much of his memory has returned. I don’t think it’s fair to look at someone’s age to determine whether they should receive care or not. also, when he was first diagnosed with Alzheimer’s/dementia, he was put on medication and I was amazed at how much it helped! God‘s not done with your mama yet. The fact that she still has breath confirms this. We live in a culture where many have forgotten how to honor our elders. I know it’s frustrating and scary and tough to know what to do. I found that just to take one step at a time is best. Take your mom to the neurologist. The neurologist may forgo some of the tougher tests such as MRI’s and will simply prescribe some of the better medications that can help her memory. And take your mom to her physician or even urgent care and have them test for a bladder infection. You might just be pleasantly surprised, once she’s on medication how much better things will be. To answer your question more specifically… I don’t know that you really need to have an answer of why she has dementia so much as finding ways that you can help her to enjoy the days she has left to their fullest.
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Im no physician however I have worked in the memory care field for over fifteen years. My thoughts are that you should identify the type of dementia your Mother has, as some forms of dementia are exacerbated by some medications.
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jacobsonbob Feb 2020
This is probably true in other cases, but the OP said her mother does not take any medications.
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Good morning concerned daughter. I'm so impressed that health professionals came out to you in such poor answers.I AM a HHA for over 30 years and my way to get things work with the Alzheimer's and dementia clients it's using their abilities.WHATEVER PART OF THE BODY AND BRAIN THAT IT'S LEFT.I had many clients...and my actual since 9/2/2017 was doing Horrible with DEMENTIA.WHAT DO THEY REALLY NEED? To me it's a great team, Empathy and ecxecution.NO MATTER TO WHAT LEVEL.My CLIENT only wanted to sleep...Now she go to singing classes...wash dishes,teak amazing showers twice to three times a week... allow visitors,goes to appointments,read the NY times back and forth...Your mom Just need to used all in her power to keep on going...FORGET WHAT PROFFESIONALS TELL U ABOUT HER...you know her better than anybody.When washing clothes ask to please help folding and accommodate laundry...include her in everything she can safely engaged.My client DR. IS VERY IMPRESSED OF HOW SHE HAS PROGRESSED.Please let your mom use whatever is left of her brain,body and soul.That should be her prescription.NOT TO LOOK FOR anything else. Let her enjoy what ever she can.Belive me you will see progress.Keep is posted...Have an awesome journey with mom...and also educated those involved in her care ...let them know that we are her assistants and we will make sure mam needs to use what ever it's left from head to toe.GOD BLESS ...AMEN
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rjonesx3 Feb 2020
Awesome response and thank you for this information.
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I think the only time to subject someone to the tests would be to confirm a diagnosis of Lewy Body dementia. The reason this is important is that there are some medications that a person with LBD should not take.
If it is early in the diagnosis there are medications that can SLOW the progression but eventually they will stop working.
There are "typical" signs, symptoms to look for or expect with some forms of dementia so that might give you a "heads up" with what might be next in the progression. If you want that as a guidebook as to what might happen in the next 6 months it might help. On the other hand sometimes trips are more rewarding if you don't have a guidebook and you discover territory on your own.
After my Husband was diagnosed, and I/we did not have a lot of testing done, I sort of came to the conclusion after a few years that he probably also had Vascular Dementia along with the Alzheimer's that had been diagnosed. There was no way I was going to put him through testing to confirm. I just kept in the back of my head that at any point he could have a stroke that would possibly kill him before the Alzheimer's would.
Ultimately your call, or yours and moms if she can still make some decisions if you want a full battery of tests done. But I would not put anyone through more than they are comfortable doing.
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You might check to see if your mom has urinary tract infections. There is a monthly medicine that can be given so she won't continue to get them and thus get worse mentally. An infection like that causes those poisons to affect your brain. Every time my mom got another bad one, we lost even more of her. I would check into that. Also, make sure she is getting enough baths and showers. And, there are some foods and activities that might help her. And, being dehydrated affects your brain too. Is she drinking plenty of water? It's an awful feeling when your parent doesn't recognize you. I would do some things to at least slow down the loss of memory if I could.
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rjonesx3 Feb 2020
You are so right!  It is awful to see your parents like that; I bet you never thought that could happen - I know I did.  We've recently learned what you've mentioned above regarding a UTI and being dehydrated affects the brain.  I too wish I could slow down the loss of memory.
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First of all, how lucky for your mom (and you) that she has got to this age with minor health issues. That's huge!
While it's true that the reason for the dementia is not really important, there are reasons to track her memory loss.
I don't think she needs a neurologist, she needs a gerontologist. For the rest of her life, the gerontologist can help both of you to make sure she's in the best health overall health possible. Definitely limit the number of doctors she sees; a gerontologist is the right doctor for an elderly person.
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Hello,  I've been told the exact same thing - it is sad but very true.  Conversely, that is a blessing that your mom is still in good health and does not take other medication.  Keep on keeping on with your mom; you'll be blessed for it.

Good Day.
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i would definitely go to a neurologist there are medications that help a lot with the symptoms of dementia. Took my mom at 88 the testing was a simple question and answer process no stress involved mom actually had fun with it. Neurologist put her on namenda. Last summer primary care said at her age ‘95’ might as well take her off namenda not necessary anymore, she went down hill fast, after 6 weeks I put her back on namenda it took over a month but she is back up to her old self. I am not an advocate for drugs but when they can improve the quality of life as much as this one has for my mom I say definitely talk with neurologist and get their opinion. Age is just a number don’t let anyone tell you “well at her age”. My mother will be 96 this year and still enjoying life, yes she has severe dementia and some days are better then others but she is always happy and pain free so to me that’s what really matters. Have a blessed day and enjoy all the moments while you can.
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disgustedtoo Feb 2020
Some meds work for some, not for others. Some meds help with certain types of dementia, but can be bad for others. If it works, great, but it doesn't always. Clearly it has helped your mother (and you), so I would continue as long as it is doing good.

We never did the "testing" and mom hasn't taken anything other than her usual BP meds, with the exception of antibiotics for a few UTIs and Lorazepam (anti-anxiety) for the first UTI as it caused MAJOR sun-downing. After UTI cured, no need for the Lorazepam.

The next 2 UTIs manifested as night time bed wetting. Go figure! Once treated, bed wetting stopped.

She started the early memory issues around age 90, moved to MC around age 93 and is now 96. Gradual recent memory losses along the way, now she's living life about 40 years ago. Otherwise, she's had no need for other medication. She still knows who I am, but asks about her mother and younger sister, both gone (mother around 40 years ago, refers to sister's grandchild, who is about 40 now, as "that baby" she's taking care of.) Mom is the last of her generation on both sides of the family. I swear she's going to outlive us all!
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Our neurologist told us the same thing regarding my MIL however, we find it important to have an alzheimer specialist established, seeing him annually unless there are problems. There is no cure. However he was needed for his expertise in establishing the exact diagnosis as we know there are so many types of dementia that exhibit different symptoms. Both my MIL AND FIL have different types of dementia. It helps us the family explain the behavior they exhibit to the public, family and friends. The Alzheimer's neurologist team is also there to help when problems with specific health and behavior issued arise. I feel they should be paired with a geriatric internal medicine doc.
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There are lots of different medications that can be taken to improve condition and minimize systems of dementia, as well as delay progression of disease. My mom has had dementia for last 10 plus years. She over 100 yo now and still healthy and manageable at home. Good luck!
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No, if it were my mom I would leave her alone. Why subject her to an evaluation for what you already know? After all, medications have side effects so if she's content and not exhibiting negative behaviors, leave well enough alone. Enjoy her while you can! I wish I still had my mom to enjoy.
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I would for no other reason than getting a confirmed diagnosis. Reason for the dementia, a mute point really. Because no matter the reason, there is no cure. There are some dementia's it helps to know which one. Like Lewy Body. It effects the frontal lobe where emotions are. These people may suffer violent behaviour.

If you have POA and it says it takes effect when the person is found incompetent, you may want that letter to help put the POA in effect.
I would want a neurologist involved if Mom needed any meds for anxiety or violent tendencies. I took Mom once a year for a while then the Dr. told me there was no reason to come back. It was just allowing nature to take its course.
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TXGirl82 Feb 2020
Does a dementia diagnosis render someone incompetent? I thought they had to be further down the road than "forgetful".
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By the way, the testing for my Mom was not grueling. I wrote notes telling what I had seen. He gave Mom a small physical, mainly testing reflexes. Had her stand and ran a few little tests for balance, etc. Asked her questions, do a few memory tests. We weren't there quite an hour. She went back for an EEG. No, changing of clothes. She took it all in stride.
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If your mom has not been evaluated, it would be beneficial to have a clear diagnosis- for treatment recommendations.
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I would take mom to a geiatric specialist in neurology for an assessment
This will help with legal questions later
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A doctor who specializes in care of older people - geriatric specialist - will be able to advise you of best practices and medications to manage mom's care. It would be helpful to have a baseline, "well", examination so the doctor can know what "best health" looks like in your LO. Then, he/she can compare notes to address problems as they pop up.

By the way, so glad to hear that your mom is doing so well.
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TXGirl82 Feb 2020
The problem with "best health" is that it often means more testing, more medications, more procedures, etc.

Her mom sounds pretty healthy for now -- only taking vitamins? What a blessing! I hope my only issue at 95 is forgetfulness...
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There are no conclusive tests for dementia. Dementia describes a set of behaviors, not a physical diagnosis. Some people with no physical symptoms exhibit dementia. Some people with a lot of physical symptoms, brain shrinkage and spotting for example, exhibit no dementia behavior.

It's not that simple. Mom has seen various doctors, neurologists and psychiatrists, not a simple one has written a diagnosis of dementia anywhere. They just list the symptoms.
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Please take your mom to a neurologist since there so many stages of dementia. You need to know her diagnosis and how to move forward with her care.
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TXGirl82 Feb 2020
Why can't she just continue as she is going now? OP could plan on the next step or two and wait until that step must be taken.
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My Mom's doctor told us that the only way to diagnose Altzheimer's is with an MRI. That is a grueling test for a younger person. Forgetaboutit. Who cares. But a diagnosis of dementia is enough for potential hospice and other care. A simple memory test is given for dementia. Do it.
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cwillie Feb 2020
I wouldn't call it gruelling exactly, I almost fell asleep during my first MRI. But I agree that for anyone who lacks the capacity to understand or who is even the tiniest bit anxious or claustrophobic it might not be worth it.
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